4 Common Misconceptions About Myalgic Encephalomyelitis

Myalgic Enceph-what now?

You probably haven’t heard the full name of this condition before, but you will have heard of ME/CFS… Or as it’s a lot more commonly known as… Chronic Fatigue Syndrome. It’s debatable within the scientific community that ME and CFS are the same thing. But that’s a whole other story for another day.

Chronic Fatigue Syndrome is a condition that is exactly what it tells you, prolonged fatigue. ME is thought to be the exact same disease by many, but some have challenged that, although they share a lot of the same symptoms (and most occur after or during a viral infection).

A lot of people don’t think it sounds that bad, “yeah you’re just fatigued a lot.. so is everyone else“.. some may say.. another may say “yeah I can imagine sitting at home all day, watching TV and reading books is nice isn’t it?” Looking at it from a ‘normal persons’ perspective with average knowledge on the condition, of course.

Well Ladies and Gents, that’s what I do everyday. Is it fun? No, no it is not.

What a lot of people don’t get is that being chronically fatigued is not just napping a lot and then suddenly feeling magnificent… that doesn’t happen. Being chronically fatigued means that you are fatigued all the time, no amount of sleep and rest can get rid of that awful feeling of needing to just close your eyes or lye down somewhere, it’s exhausting, especially when you’ve only been out for a couple of hours.
You may feel sickly, irritated, moody, fatigued, have cognitive problems and just feel genuinely unwell, and the longer it goes on, the longer it feels like a burden on your life, and every aspect of it.

I came across a blog post a while back on chronic fatigue syndrome (CFS/ME) and was shocked to say the least at what it had to say. One paragraph states that a study has suggested the way to make it better, in some aspects, is to just get up and have a nice walk… maybe see a shrink. That’s not good enough, i’m sorry… no i’m not sorry actually.

A lot of people with CFS/ME are completely debilitated by their condition and a lot have Fibromyalgia too (which is still in research to identify how the condition starts and affects the human body itself) so does that mean you can walk that off too?
I have a lot of other conditions and my ME/CFS was possibly caused by a glandular fever virus that is 100% not relapsing but I unfortunately caught a horrible case of it. These things don’t just magically appear, and to think that they can magically disappear is absurd.

So here i’m going to talk about the most common misconceptions about ME/CFS

1) “CFS/ME along with Fibromyalgia and PoTs usually affects young educated white females in their teens to mid 20s”
This is not one bit true. Young females have been grouped together in recent history (probs since the 90’s, maybe earlier) who have been high achieving students and suddenly became bed-bound, but they’re only a fraction of the population suffering. A study in 1999 actually proved that the highest percentage of suffers weren’t of high social status or were from a lower income background. Not necessarily all young white females, right? (Also: In 1990 there was an article that linked CFS/ME to ‘yuppies’ which are young working people… controversy! am i right???)

2) “Its a phycological disorder”
Many many people have tried to suggest this to me, it isn’t true. IT IS NOT AN EXCUSE FOR MY ILLNESS. Pro health proves this by stating: “Numerous studies have documented abnormal immune system, endocrine system, and nervous system function in patients with ME/CFS. There have been consistent findings of reduced natural killer cell (NK cell) function, which is indicative of viral infection, B-cell abnormalities associated with autoimmune disease, and elevated pro-inflammatory cytokines, associated with immune activation. In addition, there are documented abnormalities in cardiac function, endocrine deficits, and inflammation in specific areas of the brain associated with memory and cognition. None of these is consistent with a primary psychiatric diagnosis”. … So there we have it.

3) “It can get better through certain behavioural treatments”
Now this is a tricky one, because its caused a lot of controversy where I live (UK) because ME/CFS seems to be treated as a phycological disorder and for some people with ME/CFS and no other complications, it seems that they get told off doctors that going down the ‘no medication route’ is the best. I was actually told this several times myself (baring in mind I had other conditions that nobody ever looked into). For some people with very very mild CFS/ME I could honestly say, yes, try it, why not? But for most, including myself, these therapies do not work and lots of people seem to push and push them on you.

4) Anti-Depressants do nothing for CFS/ME
I can understand from one perspective that anti-depressants are a last resort. But from the other, anti-depressants can actually tackle neurological pain, help increase your dopamine levels and bring your mood up. For one doctor to say no to anti-depressants and another think they’ll help proves my point. I guess this isn’t a ‘myth’ as such, but I wanted to add it as anti-depressants have definitely helped me.

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